Adjustment and support needs of glioma patients and their relatives: serial interviews
Adjustment and support needs of glioma patients and their relatives: serial interviews
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DOI：
10.1002/pon.3136
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发表时间：
2013-06-01
期刊：
影响因子：
3.6
通讯作者：
Murray, Scott A.
中科院分区：
文献类型：
--
作者：
Cavers, Debbie;Hacking, Belinda;Murray, Scott A.
目的了解胶质瘤诊断调整过程中的影响因素。方法对26例患者和23名亲属进行定性访谈，共80次，访谈时间分为正式诊断前、治疗开始时、治疗结束时、治疗后6个月和丧亲后5个关键阶段。结果报告了高水平的痛苦，特别是在诊断之前和之后。许多参与者描述了在他们疾病的早期缺乏具体信息，并且不清楚什么是错误的以及接下来会发生什么。他们通常希望获得更多的程序信息，以及关于他们的病情和治疗方法的信息，尽管人们准备好听到这些信息的时间有所不同。获得安慰和支持对患者及其亲属至关重要，以帮助他们接受疾病。在疾病的早期阶段，这种需求特别迫切，当时痛苦和不确定性处于顶峰，随着人们适应疾病而逐渐减少。结论提供适当的信息，什么期望早期和频繁的支持方式是非常赞赏的患者。在确保患者及其家属充分知情和促进允许希望的适应性应对之间有一个重要的平衡。版权所有（c）2012约翰威利父子有限公司
Objective To understand factors influencing the process of adjustment to a diagnosis of glioma. Methods Twenty-six patients and 23 relatives took part in 80 in-depth qualitative interviews conducted at five key stages: before formal diagnosis, at start of treatment, on completion of treatment, 6months post treatment, and post bereavement. Results High levels of distress were reported, particularly preceding and following diagnosis. Many participants described lack of specific information in the early part of their illness and a lack of clarity about what was wrong and what was going to happen next. They often desired more procedural information, as well as information about their condition and treatments available, although there was variation in the timing of when people were ready to hear this. Receiving reassurance and support was essential to patients and their relatives to help them come to terms with their illness. This need was particularly acute during the early phase of the illness when distress and uncertainty were at a peak and lessened over time as people adjusted to their illness. Conclusions Offering suitable information about what to expect early and frequently in a supportive way is much appreciated by patients. There is an important balance between ensuring that patients and their families are fully informed and fostering adaptive coping that allows for hope. Copyright (c) 2012 John Wiley & Sons, Ltd.